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                           Coalition Meeting
                           -----------------
                            by Diane Morof

On November 4th and 5th I attended the first United States Celiac
Coalition (USCC) meeting with Jim Lyles and Dr. Alexander in Chicago.
The group included over 60 representatives from various celiac support
groups nationwide.  Drs. Joseph Murray and Alessio Fasano served as
facilitators at the meeting.  The meeting went extremely well and I
feel that in the future the USCC will be a driving force to help
educate the country on the diagnosis, treatment, and support of
persons with celiac disease (CD).

Dr. Fasano, from the University of Maryland School of Medicine, began
the meeting with some interesting data on celiac research:  Over the
past 30 years there have been 6,276 papers published on CD and only 10
of these were from the USA.  In an effort to quantify the number of
celiacs in the USA Dr. Fasano took his own money and purchased 2000
blood samples from the Red Cross.  He screened each of the blood
samples for CD using the endomysial antibody test.  Eight of these
samples tested positive.  This indicates a potential ratio of 1/250
people in the USA with CD or with the genetic potential to develop CD.
If this ratio were to hold true for the entire USA population, it
would mean there are over one million celiacs in this country.
Remember this is one small study, using samples from the Baltimore
area.  The point is, we need more studies such as this, using a larger
sample size derived from multiple areas around the country, to get a
reliable estimate of the incidence of CD in this country.

Dr. Murray then spoke on the importance of educating the medical
industry to recognize and treat CD.  Dr. Murray also spoke about the
importance of forming a coalition to 1) provide research dollars, 2)
increase awareness of the food and drug industry, 3) reduce the
duplicative efforts of the various national and local groups, and 4)
combine all of the talent of the individual support groups on a
national basis.

Bev Ruffo, past president of the Canadian Celiac Association (CCA)
spoke next.  Bev was extremely informative on how the CCA began and
how it currently operates.

After Bev spoke we broke into smaller groups to discuss which issues
are important for a national coalition and to prioritize them.  We
then regrouped and compared notes.  As a group we collectively decided
to focus on these four categories:

  1.  Public Relations
  2.  Professional Education
  3.  Research
  4.  Regulatory/Commercial Liaison

We decided to form a task force for each of the four categories, and a
steering committee to oversee the four task forces.  Each task force
will have a representative for the steering committee.  We then broke
into the four task forces based upon individual interests and areas of
expertise.  Each task force discussed goals and identified items that
could be accomplished in the next six months.  We plan to communicate
via computer, fax, phone, and mail to complete our goals.  We decided
to meet again in about six months to review our progress and to
formulate additional goals and plans.

The meeting was very exciting, exhausting, and informative.  We should
be very proud of our local group as we have a lot to offer to the
USCC.  If anyone is interested in getting involved in this national
effort your assistance would be welcome and greatly appreciated.  Just
let me know.



Miscellaneous Notes:
--------------------

Baltimore Conference Tapes:  There was an excellent celiac conference
in Baltimore this summer which eight members of our group attended.
At the conference we were promised that audio tape recordings of all
the speakers would be available for a reasonable cost.  We recently
received word that the tapes are now available as a set for $45,
including shipping and handling.  To order a set of tapes, make your
check payable to Program of Continuing Education/UMAB, and mail it to:
UMMS - Division of Pediatric GI & Nutr., 22 S.  Greene St., Box 140,
Baltimore, MD 21201-1595, ATTN:  Vicky Roach.  Allow four to six weeks
for delivery.  These tapes will only be available for a limited time,
so if you want a set don't delay.